Operation Tyson - Living with FOP
My mate Tyson is an absolute legend.
(AFL Grand Final 2016)
He is 17 and suffers from an extremely rare condition called FOP or 'Fibrodysplasia ossificans progressiva'. To put it briefly, his muscle and joint tissue are slowly being overtaken by bone tissue, ie his muscles are turning to bone. So as time progresses he is being caged further and further into his own body.
As a Fitness Coach, I have trained with Tys once a week for a good 6-7 years now. I have watched him go from walking with crutches and being able to stand up unassisted, to being wheelchair bound but still upper body able, to now extremely dependant to the point where he needs to use tongs to reach his mouth to eat, and requires extra assistance for the things a 17 year old really doesn't want assistance with...
Early days, our training sessions included running with crutches, balancing on his feet and hopping over a rope, seated cricket and full blown seated boxing matches. Today we are restricted to banded stretching, passing a tennis ball and pulling himself along in his wheelchair with his 1 semi able leg. After each session he now requires me to pick him up and put him in the car. Regardless of his restrictions, we always have fun during our sessions and it gives him a chance to chat about himself and what he has been getting up to in his life.
He is tough as nails and rarely shows any frustration with his condition. But I know deep down it would be hard. He is incredibly intelligent, loves to read, loves the footy and his Bulldogs, and is a mad Pop Culture fiend. From Marvel to DC, Walking Dead to Game of Thrones, Harry Potter to Rick & Morty. Tys knows about it all and loves it.
Tyson deserves the absolute world. There is currently no cure for his condition, and due to him being 1 of 14 people in Australia with FOP, there is zero government funding towards finding one. He has a beautiful family to support him, as well as his 4 other amazing siblings. I am sure the costs required to help Tyson would be high, but it is nothing to them to have such an awesome person as Tyson.
I want to do something incredible for him. Not to raise money for research, he deserves something purely for him. He deserves something amazing. He deserves to go to the greatest pop culture convention in the world. He deserves to go to Comic-con in San Diego, USA. July 2018.
On the days of May 24, 25, 26 and 27, 2018 I am going to complete 4 huge physical challenges. An open water swim, a huge air resistance bike ride, 8 hours of CrossFit training and a trail run. 1 challenge a day for 4 days.
1/ Swim - Mt. Martha Life Saving Club to Mornington Pier (or vice versa, water currents pending)
2/ Bike - 300km's on the Assault Air Bike (fixed fan bike). CrossFit Cranbourne, Cranbourne.
3/ CrossFit - 1 CrossFit style workout an hour, every hour, for 8 hours. CrossFit Cranbourne, Cranbourne.
4/ Run - 16 Laps (51kms) of the Lyrebird Track, Dandenong Ranges.
I am calling on as many people as possible to help in any way. I am doing this to raise money to get Tyson to San Diego... Flights, accommodation, Comic-con ticket, food, spending money. Everything he needs to have an epic adventure.
You can help by joining me on any of these challenges and raising money yourselves. You can buy into these challenges by donating to the fund. You can just donate to me for completing the challenge. You can tell your friends, family and community to get on board and help make this goal a reality for Tyson. This is going to be the toughest physical challenge I have ever put myself through... but it is all worth it if it means Tys can go to Comic-con.
Finally, any support I can get for the challenges would be fantastic. Your knowledge and experience, or ability to help/volunteer would be hugely appreciated.
Training has already started. Lets do it for Tys.
**The location setting for this campaign is stuck on New Zealand. It will not let me change it to Cranbourne. I am working to fix this error.
Holy moley what an amazing bunch of people you all are for donating to Tyson’s cause!
A huge thank you to everyone that has donated or helped in some way up to this point! The love and support and help so far has been out of this world. Thank you.
I’m fired up! The sky is the bloody limit. Let’s see if we can double down, reach 20k, then we can get his family there to be with him and share this experience. Nothing would make me happier than to have his fam, who care for him every day, to be there. They deserve this trip too.
Let’s do it!! Please share this around.
We have tickets! An awesome company is helping us get legitimate badges for the event at no inflation to what they got them for. TODAY IS A GREAT DAY!
I have a great idea that will hopefully get us the attention of Comic-con International.
So a few people have contacted comic-con directly via their contact form. What if I can get as many of you as possible to do the same? If we can get 3-4-500+ people reaching out with the same cause... surely we can grab their attention.
Can you please help? We may just have an impact!
Here is a link to the contact form:
You could also reach:
You can copy and paste Tyso’s story.. or quickly write something in your own words.
Please, if you have 5mins to spare out of your busy day, your help would be greatly appreciated
Please, if you have any leads for tickets, or know of someone. Please ask. This is certainly the biggest challenge so far to make this goal a reality
Training is going well! Have had a couple of swims in the bay now and it feels great! 8km is a long way but I am confident.
We had a go at the Lyrebird Track on the weekend. It was tough! Much harder than I last remember. It certainly going to be a difficult task, if not the hardest of the lot! Better keep practicing.
In just one day we have already managed to raise $3,445 for Operation: Send Tyson Stanley to Comic-con! Plus the additional $800 given to me at our CrossFit 5th b'day night! AMAZING!
Blown away guys and I haven't even done anything yet!
Keep spreading the word, use your contacts and resources to help make this happen for Tys. #1 issue we currently have is getting him an actual ticket. So if you know how or have someone that can help, please shout out. Currently my only option is to buy a resale ticket at a jacked up price of $1100+ per ticket. If we can raise plenty we will take this road, but lets try exhaust all avenues first.
Get around it guys!
PS - If you wish to join me on some of these challenges, I will set up a rego system this week!
PPS - CrossFit day - I am yet to program the workouts. Post your fav's below!
Only 5 1/2 weeks to go. Feeling super fit, but must swim a lot more to be ready.